Post Cath

Owen had a rough recovery last night.  It took him a while to come out of anesthesia and we had to spend 4 1/2 hours in the short stay unit.  That was the longest 4 hours ever!!!  Owen usually wakes up and is pretty calm and complacent.  I don't know what came over him, but HULK is the best way to explain it!  He was trying to pull out his IV, wouldn't keep his leg still to avoid bleeding from the femoral artery.  He was screaming, pinching, biting, kicking, bossy and crabby.

We had a chance to speak in more detail with the cath team and also with Cardiology.  Owen continues to be maxed out on medication therapy as well as oxygen.  There isn't anywhere to really go from here.  His Tricuspid Valve cannot be repaired or replaced at this point.  The Fontan isn't even considered at this time, "it would take a miracle."  Transplant will be the next step. 

The good news is that Owen's function continues to be decent.  He has more energy than ever and continues to improve clinically.  We are just counting our blessings and hopefully he has a few more years in this heart.  I know that may be wishful thinking, but I'm hopeful. 

Waiting for your child to decline sounds brutal.  We have been told that when he declines, it will happen quickly.  

Just when my heart was heavy and I let myself feel sorry for him, we were placed in a recovery room with a 17 year old HLHS teen.  He has had a wonderful life and is now being accepted into many prestigious colleges.  It was brilliant to hear his story and talk to him for a good couple hours.  Unfortunately, his heart is failing and he is on Milrinone waiting for his new heart.  He also has highly sensitized antibodies, just like Owen, and was there for his 5 hour IVIG treatment.  He was in high spirits, had a positive attitude and so sweet.  I  am grateful we were in the same room.. I needed to hear his story at that very moment. 

The hard truth is that all of these single ventricle kids will need a transplant.  There is no cure.  It's all just a matter of "when" their heart will start failing.  It doesn't matter if Owen is 5, 15 or 30.  We will continue to move forward enjoying life to the fullest.

I was so glad that Subrina (Chase's Mom) came down to visit with me.  It was a tough night!  If you don't know Chase.. he's Owen's buddy from Phoenix who just got his new heart at LPCH a few weeks ago and is doing fantastic!  Thanks for the talk Subrina!

We got back to our hotel around 8pm last night.  Owen was so excited to see Uncle Rustyn who drove down from San Fran.  It really lifted his spirits and he was feeling more like himself.  He still had a hard time holding his core up and kept falling over.  His speech was slurred and I was about ready to take him back to the hospital.  He ate a little and finally crashed by 10 and woke up a new boy!

I am so grateful that we don't plan to do another cardiac cath  until next year.  We will be followed every four weeks by Dr Stock (per Stanford) and we will be back at Stanford in September for followup.  Any sign of decline, we will come back sooner.

Around 9am, we decided to pack up and head down to "San Adego".  Owen was ready to get out of there!  We finally made it to the time share by 5:30pm and were so thrilled to see Kamryn!! 

We are going to spend a few days on the beach, soaking up our time together.  We are so grateful for the gift of "time" and for all of the support from our family and friends.  You are all so wonderful!!  I know it's hard to fully grasp the situation and how scary it is. 

I still don't know what caused Owen to react the way he did to anesthesia, but so glad that the mood swings were short lived. 

I have tons of pictures, but I am too exhausted to post them right now. I promise them tomorrow.  Goodnight.